Five Ways to Fill Your Cup

 

In thinking about National Family Caregiver Month, I was reminded of a previous Mothers on the Frontline podcast episode in the Just Ask Mom series, called “Filling up your Cup”. In it Alissa explained the phrase, “my cup runneth over” in a way I needed to hear as a caregiver. “What runneth over is for me to give you, what is in my cup is for me.” She continued: “I have to do my best to keep my own cup full or I’ve got nothing to offer – to my children, to others, to advocacy, to change – I got to do my best to keep myself whole and intact as well, or it does no one any good.” This idea is at the very heart of our work at Mothers on the Frontline, not because we live it, but because we aspire to.

Sometimes when loving and caring for someone with mental illness, it feels like there are holes at the bottom of our cup. During the holiday season, when we are barraged with images of happy families and tranquil moments of joy, those holes can feel vast. There are the practical challenges that use up our ‘juice’: finding care and services, navigating health and school systems not set up to help children like ours. There is the loneliness and isolation that stigma and discrimination places on the child, caregivers, and siblings – more spilled juice. But perhaps the most draining are the cruel comments that come from our child when they are ill and the cruel comments that come from others about our child or family who do not understand what is going on. It can leave us feeling pretty empty, and this emptiness can feel magnified during the “season of giving”.

So what are we to do? In this age when “self-care” has become a marketing slogan for spa packages and beauty products, what does it really mean to care for and love oneself, especially when one’s life is structured around caring for a person with a serious mental health condition? What “self-care” is really available to all of us, no matter our financial situation or the current level of crisis we navigate. In this podcast episode, Alissa mentions five things we can all do:

  1. Take a deep breath. Breathe out all that you are holding in. Breathe in life and self-love.
  2. Know “this too shall pass”. Whatever crisis is presenting, it is temporary. I would add that so too are good days -and so here is permission to fully enjoy those good days when they come. They are not times to merely catch up and get things done in preparation for the next crisis. We get overwhelmed by an imagined future laid out in front of us, but the moment at hand is manageable. Stay there and keep breathing.
  3. Physical exercise. If you are like me, this can be a real challenge. Try to find something doable and enjoyable for you. Whether it is light stretching, a walk outside, etc. Find something that is realistic for you and that feels good. This is not about looking good or fitting into that certain pair of jeans. This is about feeling good in and loving your own body – supporting it so it can support you.
  4. Taking care of your own mental health needs. We live in community with our families and those under our care. We affect and are affected by each other. There has been significant research into how a mother’s depression or anxiety can affect her child. Recently, researchers are finally starting to ask how a child’s mental health condition can affect their mother’s health. (See this article.) If you can benefit from therapy, medication, support groups, etc., give that gift to yourself. It does not matter whether your mental health needs predate your care giving or were brought about from stresses and traumas associated with care giving: you deserve the support you need to be well.
  5. “I am on the list too.” In our long to-do lists as caregivers, Alissa reminds us that we are on the list too. This means being intentional about filling our cup. I would like to add that how we do so will depend on our situation and we need to be flexible as our situation changes. But that does NOT mean taking ourselves off the list. Ask, “what can I do for me in this situation?” For me right now it is waking up 30 minutes earlier so I can journal and drink a cup of coffee while it is still hot before my boys wake up. (Seriously, as a mom, drinking a warm drink while it is still hot is a big deal!) This simple thing is not possible in those situations when my son does not sleep due to mania. Then I have to find something else – maybe it is using respite services for an hour so I can drink a hot cup of tea undisturbed at a coffee shop or with a friend.  For years while we were on a waiting list for services, there was no respite – then I might have used the brief moments when I took my shower to breathe deeply and intentionally – that might have been all that was available to me. But it was still something that made a difference. All too often, when the situation changed making my previous self-care impossible, I just dropped it, taking myself off the list completely and it always results in an empty cup. This November, let each of us commit to filling our cup, in whatever ways we can, so that it runneth over, nourishing ourselves, our families and our communities.

And if there is a caregiver in your life, in this season of giving, there is no greater gift than helping another fill their cup. Whether it is being present with them in their pain, sending a kind note, or doing what you can to provide them a few minutes to drink their cup while it is still warm, magically that small act (which does not cost a dime) can fill their cup to overflowing.

Listen to Alissa’s full interview on the Mothers on the Frontline Podcast: Just Ask Mom Series, episode 7.

 

 

The School to Prison Pipeline Project

image of black bars against grey background. White words written over bars: Suspension, Restraint, Seclusion, School Resource Officers, Special Education, Institutional Racism, Push Out, Poverty, Ableism, Classism, Zero-Tolerance, Expulsions, Homo-Transphobia

It goes by many names: ‘The School-to-Prison Pipeline’, ‘The School-to-Confinement Pipeline’, ‘The School-to-Court Pipeline’, ‘The Cradle-to-Prison Pipeline’, etc. These names refer to sets of policies and systemic practices that lead to the over-representation of people of color, poor people, LGBTQ+ individuals, persons who have been in the foster care system, and people with disabilities in prisons, jails, and juvenile detention facilities.

Mothers on the Frontline is collaborating with Grinnell College on a project called “Digital Stories for Social Justice: The School-to-Prison Pipeline.” Professors Stephanie Jones (education), Tammy Nyden (philosophy) and Kesho Scott (sociology) received the Grinnell College’s Innovation Grant to create a story archive and new kind of course.

This project aims to document this social injustice by digitally recording stories of people touched by these policies and practices and providing a platform for their stories to influence public narratives about justice reform. The project is adopting the Mothers on the Frontline’s methodology of story work, which insists that the interviewer share salient lived experience with the interviewee, so as to prevent the violation of an outsider coming in and shaping one’s narrative. The interviewee determines how they are introduced, having full control over their level of privacy. Questions are designed so as to give space for the interviewee to take the conversation in any direction they want, while maintaining the natural contours of an informal conversation. These interviews are not a study: there is no particular research question to be answered. Such studies, despite their best intentions, necessarily start out with a narrative that the researcher imposes on the interviewee. This method, rather, is completely inductive. It allows a gathering of the stories the interviewee wants to tell in that particular moment. This methodology is built on the premise that more interesting themes will naturally arise if not held down by preconceived notions from current narratives. We believe that this archive will inform researchers about what qualitative and quantitative research questions need to be asked and studied.

This methodology is also built on the idea that when people are given a safe space, they will tell the story that they need to tell at that particular moment. This is where the story work becomes transformative for both the teller and the listener. This is where the healing of story work is found – in the agency, integration, and holism of story work. (Future posts will discuss these key principles of the Mothers on the Frontline story work methodology and its influences, such as Q’um Q’um Xiiem’s / Jo-ann Archibald’s book Indigenous Storywork.)

This School-to-Prison Pipeline project involves three main components:

  1. The creation of an online digital story archive that is freely available to the public and will be housed in Digital Grinnell. (A subset of the stories will also be housed at the Iowa Women’s Archive at the University of Iowa.)
  2. The creation of a new course: “Digital Stories for Social Justice” that incorporates a Digital Humanities lab in which students develop both story work and digital media skills to inform and influence public discourse on justice reform. The story archive serves as an important anchor for the course. While data stories and various digital story techniques will be studied and practiced, they will never be far removed from the reality that the numbers and visual representations are only meaningful to the extent that they intersect with and respect true, personal lived experience.
  3. Opportunities for students to work with activists, advocates, and scholars to practice the skills they learn in the lab and make real difference in the world.

Mothers on the Frontline is excited to be part of this project and particularly looks forward to co-facilitating two of its events:

October 26-27, 2018: The Digital Stories for Social Justice Archive Workshop: Participants with lived experience will learn how to record audio interviews in their communities for the archive.

May 8-10, 2019: The School-to-Prison Pipeline Story Center Workshop (co-facilitated by StoryCenter). Participants will create and produce their own 2-4 minute video based on their lived experience.

The grant culminates in the first teaching of the course Digital Stories for Social Justice in the Fall of 2019. Students will take a 4 credit interdisciplinary course on the school-to-prison pipeline along with the 2-credit digital storytelling lab. During fall break, students will meet with activists, advocates, and non-profit leaders during a two-day workshop, in which they work together to produce a public syllabus on the issue. Students will consult the organizations to create class projects (print and interactive info graphics, podcasts, and videos) that will become part of the public syllabus and freely available resources to those on the frontlines of this important justice work. Mothers on the Frontline looks forward to participating in that event as well.

Subscribe to our Newsletter for updates on these events and other events and to receive additional resources.

New Diagnosis, New Beginning

A lot has been going on behind the scenes here at Mothers on the Frontline. We have been busy doing interviews, working with our amazing team of Grinnell College Student Workers to prepare our first Podcast Series “Just Ask Mom”, learning about the creation and accessibility of websites, and so many other things completely new to us. So while we have been quiet  during March and April, we have been here, busy preparing for May: Children’s Mental Health Awareness Month (more on that in a later post).

In some ways our journey to Mothers on the Frontline is very much like the process of becoming a special needs parent. There is a steep learning curve and many different moving pieces that somehow now you have to find time and energy to navigate, while still having to steer your ship through the pathways of running a home and family, being an employee, and all the other obligations we all must meet. It is overwhelming, but at the same time exciting. For years now a vague idea and sense of unmet need has been part of our conversations – those between Dionne and I. It is not completely unlike that strange pre-diagnosis experience, when symptoms and challenges are appearing in your child and you know you need to do something, but what is so unclear and there seems to be no source of reliable guidance or sure answers. But all of sudden (or so it seems, though it was years in the making) you get a diagnosis and things change. No, not the child. The child is the same, their needs are the same. But with a diagnosis comes a ray of hope that you will be able to figure out what to do now. That you will finally find your “people”- other care givers on the same journey that can recommend service providers, school accommodations, and most importantly, help you reimagine your role as care-giver. No child comes with directions, but when your child has special needs, particularly those that involve social, mental, or intellectual development, those that involve regulation of mood or extreme anxiety, hearing voices, or wanting to die, well, it is even more confusing how to best meet your child’s needs. Interestingly, as we talk to other parents and reflect on our own experiences, the most important thing is re-conceptualizing our role as parents.  Changing our attitudes and instincts. Learning to look at behaviors through new eyes, not as things to modify, but as indicators of what our child needs and the realization that when those needs are met things start to change for the better. What use to be tantrums became meltdowns. My previous unsuccessful attempts to double-down on consequences gave way to understanding that painful sensory stimuli (or lack of it) needed to be addressed before my son could stop screaming, hitting, etc. I learned that while a time-out or lecture only intensified and lengthened the “behavior”, he quickly became calm after wrapping him tightly in a soft blanket and applying pressure, giving him fidgets to squeeze, or simply allowing him to vent all of the bad thoughts he needed to get out without consequence. It not only involves creativity, but a raw honesty about what I am uniquely situated to provide my child, and what needs he has that I am unable to meet. This is key, because we realize that to help our child we have to become part of a team, a team of providers, educators, community members, etc.

I do not mean to minimize the  journey to diagnosis by comparing it to where we are at this point in our project. I only wish to bring you into our journey, to share that we are in the process of re-conceptualizing our roles as academic-mother-advocates. We finally feel able to articulate the problem with which we were struggling – the lack of public understanding and therefore lack of political will to address the children’s mental health crisis. And with that diagnosis, we are now ready to enter into a team effort with the community, with you, to re-conceptualize so many issues in our society, from youth substance abuse, incarceration, homelessness, and school violence. Our recommended treatment: stories. Wrap our community in stories that warmly and gently increases the pressure so as to help us as a society move beyond anger to understanding and effective action. What better storytellers to begin with than the Mothering?

So we thank you for your patience. Just as parents of a newly diagnosed child learn new vocabularies, skill sets, and how to bridge communities for the wellbeing of their child, we are learning new vocabularies, skill sets and hoping to bridge communities for the wellbeing of our shared society. We hope to be a bridge between caregivers, consumers, advocates, activists, and academics. We hope to build this community around stories. We begin with personal stories of mothering, because that is where we find ourselves.

No, wrapping my son tightly in a warm blanket did not make everything better. But it was a start. Stories in themselves will not be enough. But it is a beginning of re-conceptualizing problems so that we can become more helpful, more compassionate, and in the end, more effective in making things better for us all.

Welcome and Please Excuse the Mess

Years before getting my Ph.D. I worked as an academic counselor in Student Affairs.  It was there that I learned to do what I called a “temperature check” with my students, I would ask every student during their weekly visit whether they were swimming, treading, or barely able to keep their head above water.  It was a good way to assess whether they needed my intervention and if so, what kind of service they needed.  Years later I have found that this is a good way for me to stop and assess my stress levels, check my son’s condition, and the gauge the condition of my family in general.  Well, if asked the question today, I would have to say that I am treading water and barely able to keep my head level.  I am tired and my family (particularly my son) has just come through one of many crises.  We are now trying to clean up/rebuild and recover, which means that my condition, can best be described as precarious.

My son has autism and a mood disorder, and if this weren’t enough – he is sixteen years old.  If you are or have ever parented a teen, then you already know that a sixteen-year-old is a frothy mix of toddler, child and adult.  He is brilliant and remarkably social for a kid with Autism.  He has friends, is maintaining a 3.5 in school, and is independent enough to take public transportation to and from home.  But he only has two gears, and when not on meds his days are spent moving between ecstasy and despair until finally his entire system crashes and he falls into a deep coma-like sleep.  His medication, when he takes it, keeps his moods regulated, and then he only has the sensory, balance, and social effects of his Autism to manage.  But he is sixteen, willful, and craving independence.  Right now, the area where he asserting control is his medication.  Which is perfectly normal and understandable, who doesn’t want to control what goes in and out of their bodies, right?  So, we are trying to ride this wave which places us (me, him and his dad) in this painful push and pull where we constantly struggle between his real desire for independence and his equally real need of our guidance.

At this moment, however, I feel like a fraud.  Who am I to write in the position of advocate when I can’t even convince my own son of to take his meds, and if not his meds then at least eat something decent.  Why would anybody want to hear my story?  After all, I have no happy ending tied up in a neat bow.  We are in the middle of a life long journey and I have no conclusions, only process.  As a mom, I spend most of my time coordinating appointments, negotiating with insurance companies, and conferencing with doctors, therapists, and teachers.  It is hard to think of my mom work as advocacy.  In fact, most of my knowledge of advocacy comes from studying public policy where advocates are described as activist or professionals who work (publicly) on behalf of a cause or group to affect political change.  Merriam Webster defines advocate as “a person who publicly supports or recommends a particular cause or policy.”  Some synonyms for advocate are “champion, supporter, backer, proponent, fighter, and crusader.”   Incidentally, Webster’s definition of mother is “a woman in relation to her child/children,” and mothering is “bringing up a child with care and affection.”  Nowhere in these vague definitions of mother/mothering are the words championing, supporting, or crusading, but this is nevertheless what we do.  If you have a child with a mental illness or disability caring, nurturing, championing, supporting and crusading is what you are almost always doing.   If you ask my son, I am his biggest supporter and worst enemy.  I did mention he is sixteen, right?

At Mother’s on The Frontline we want to enhance the notion of what it means to be an advocate.  If you are a mom and you are negotiating your child’s 504/IEP, then you are an advocate.  If you are sharing your story with and supporting other mothers of children with mental illness and disabilities, you are an advocate.  When you coordinate a plan between the psychiatrist, counselor, and coach so that your child can participate in a sport (or activity), you are an advocate.  We want to know about your process, how you survive, thrive, how you fall and get up.  Personally, I have learned as much if not more from the moms who talk candidly about their experiences raising a child with mental illness than I have from pediatric sites, cookbooks on diet/nutrition, and the pamphlets that litter doctor’s offices.  It is our goal that this site be both resource and refuge.  A place where you come to share as well as learn.  Here at Mothers on the Frontline, we recognize your mothering as advocacy and your story as valuable.  We want to hear from you.  Whether you are swimming along, treading in place, or barely able to keep your head above water, we believe your voice and your experience matters.

Where to begin…

Sometimes it’s hard to know where to begin. Mothering a child with special needs is overwhelming, all the more so the systemic problems preventing kids from getting needed services.

Mothers on the Frontline started with one simple idea:

Mothers have unique insights into the needs of their children.

Not an earth-shattering idea, is it?…
Or maybe it is a game-changer!

What if we created a website that would allow mothers to share their stories, their wisdom, their experiences, in such a way that they would:

  1. Be empowered to most effectively help their children
  2. Reduce the stigmas surrounding children’s mental health
  3. Give decision-makers key insights to help them better help our children

That would be game changing.

My perspective as a mother has often been downplayed or dismissed by professionals, whether they be doctors, educators, or the many therapists who have come in and out of our lives. It is not that these individuals are anything less than caring people who have dedicated their lives to helping children – it is that they have been taught to think of themselves as “experts” on whatever is ailing my child, though they have known him for less than five minutes and only see him through their narrow professional lens.

Here is where the conundrum lies: all of them have valuable knowledge and experience to potentially help my son, but taken together, the result is most often contradictory advice, services in silos, failure to address the whole child, and unnecessary trauma for both my son and family.

I wish my experience were unique. It is not.

A few years ago, I was desperate. I was unable to get the school district to set up and consistently follow an Individual Educational Plan that was appropriate to my son’s medical diagnoses and unable to access medical services he desperately needed because of a three-year waiting list for Iowa’s Children’s Mental Health Medicaid Waiver.

After trying everything, I called my state senator. He generously met me for coffee. That meeting changed my life in two ways:

  1. He helped me understand how to navigate a broken system. (For example, when the director of special education did not return my phone calls or e-mails for months at a time, he recommended that cc my next email to the board of education. I did and got a reply within a half hour.)
  2. He helped me understand that elected officials want to hear from mothers. Politicians are aware that professional associations and their lobbyists have ulterior motives; but they know mothers are focused on the wellbeing of their children.

Wow! Let’s take that in… not only do elected officials want to hear from mothers, but our voice is critical to effecting change.

My first thought was “mothers of special needs children are doing everything they can to survive the day – we are not in a position to be politically active.”  (At the time I was bringing my son to five different therapy appointments a week and working full time -absolutely necessary given the out-of-pocket expenses not covered by insurance. Not to mention my son’s condition prevented more than two hours of sleep at a time – for either of us.)

Circumstances changed that year – my son’s symptoms became much worse and we were no longer confident that he was safe to himself, and possibly to others. After his first mental health hospitalization we made the heartbreaking decision for him to live in a PMIC (Psychiatric Medical Institution for Children), where he lived for nine months.

These months were a time of healing and recovery: for a period of time I knew my son was safe and saw him flourish academically in an educational environment that met his emotional and developmental needs.

As for me, the reduced stress, regular sleep and less complicated schedule of those nine months gave me the ability to look beyond daily survival for more sustainable and systematic solutions. I became a children’s mental health advocate.

Since then my son has finally received the Children’s Mental Health Waiver. Its services have been key to his success living in the community. Our struggles are not over, but each year he becomes better at articulating his feelings and asking for help before he escalates or considers hurting himself.

Advocacy has become a regular part of both of our lives. He has become a Tourette Syndrome Ambassador and works to help others better understand the condition. This work has blended nicely with his passion for politics and he has enjoyed opportunities to talk to legislators at the state and federal level.

As for me, I have spent the last few years contributing a mother’s point of view to state-level discussions on children mental health health policy. This work motivates me to find ways to help other parents share their stories, their wisdom.

Which brings us back to idea behind this website:

Mothers have unique insights into the needs of their children.

The goal of Mothers on the Frontline is to empower mothers to share their wisdom and a platform to do it.

In doing so it can also give decision makers a deeper understanding of how children’s mental health issues intersect with family systems, educational systems, juvenile justice systems, health care systems, communities, etc. In other words, its helps professionals and elected officials have a better view of the needs of the whole child.